Tuesday, November 18, 2008

T-Shirts

I think I'm gonna go with "It starts with education. www.erdheimchester.com " for the T-Shirts. I think people are going to be more encouraged to donate once they learn more about ECD. Come to think of it, donations come in many forms. The message I get is, since our disease is so rare, research isn't warranted. So, it doesn't matter. Who's going to miss a hundred or so people?
With this methane emitting from DC, we could use folks to write, call, E-Mail, donate, etc. They need to realize that we're people with families and loved ones. As we've all heard, "The squeaky wheel gets the grease". Personally, I don't think we deserve to die and leave broken-hearted people behind just because we have a rare disease.
So, LET'S GET SQUEAKY!!!!

Sunday, November 16, 2008

Je ne compren pas

Ya know. It's funny how family members (Mom not included) won't donate a nickel for research to cure a disease their own relative/in-law has, and it ain't the economy. My cause page at Facebook has been up for months, now. I've also sent out notices to my entire E-Mail list. I let them know about erdheim-chester.com, too. They can get more info, updates and/or donate on that site. What gets me is, I'm not asking for a bankroll. A dollar helps. But, guess who gets hit up for Girlscout Cookies or donations for some drive at school, and we have way less money to toss around due to my illness. With us it's whether we eat, have an abode and/or stay warm thru the Winter. Plus, we're not talking about some field trip or prize. My sight and/or life could hang in the balance with this disease.
Geez, I don't understand people!!

Saturday, November 1, 2008

Results

Pleasant surprise. My doctor was very encouraging and told me no new growth was found on my MRI/CT scan. He was pleased to hear how dedicated I have tried to be in my exercise routine.
My wife and I celebrated on the way home by having lunch at Appleby's.
Yummy (My wife, not necessarily Appleby's)! :-)